Saturday, November 15, 2008

Trip to All Children's

The car is loaded up and ready to go . . . as soon as we get in the car, of course. =0)

I guess I was hoping for more information from this doctor's visit. I think I was hoping that they would prescribe one med instead of keeping Isaiah on the 10 he is already on and adding 2 new ones (well, adding 1 and exchanging one). He now has prednisone and elocon added to the regimen of 10 medications, bringing the total to 11 meds a day (the elocon replaces the triamcinolone). Thank God, it's not 12! =0) Seriously, though - thank God!

Anyway, the appointment went as expected. NO leukemia (which I figured, but it's still scary to hear the word)!!!! His eosinophils, RBC, HCT, HGB, Anion Gap were high, along with the IgE levels (which I will get to in a minute). He actually had a few lows (Osmo, Retic). His IgE level from 2006 went from over 700 to 2,000!!! I guess that explains some things. His levels with the foods haven't changed at all, and the levels to cats and dogs is close to being off their charts. We were told he needs to stay away from animals as he is so sensitive it could set him off. Good thing we don't have any pets apart from the fish! =0) That also means visiting homes with pets . . . there is no guarantee that the antihistamines will control the reaction (which has resulted in anaphylaxis). His other levels (the specific food IgE levels) did not change. His allergies to the usual allergy suspects are still off the charts - we won't be adding any new foods for a while. The doctors are skeptical, with his levels, that he will ever be able to eat any of those foods. We are still looking at a strict avoidance of milk, eggs, wheat, soy, peanuts & tree nuts, all seafood, beans . . . I could go on, but you'd be here a while. =0)

The doctors said that they want Isaiah on a low dose of steroids for a while, to stop the anaphylaxis episodes from happening so often - they didn't like the idea that Isaiah has the episodes 4 to 5 times a year . . . he's already had 4 or 5 so far this year. They also classified his eczema as severe and gave Isaiah the elocon to help control the rashes. Elocon is usually not something that they prescribe unless it's warranted in children. It's also not something that Isaiah will be on for an extended period of time - too much of the topical steroids can cause cataracts.

We are now to give the Epis at the first sign of a reaction - even just vomiting/diarrhea/cramps (like a couple of nights ago), itchy throat (along with hoarseness and tightness), breathing difficulties/coughing/wheezing, weak pulse/fainting/dizziness, and unconsciousness. Any one of those merits the use of the epi. Of course there is also the usual hives and edema. I hate giving the Epi - it's huge! It looks like it hurts so much, yet I don't want Isaiah to die either. I don't like him getting sick, I don't like him being in pain, I don't like the discomfort of these now confirmed "severe" rashes. It's hard to watch him go through this. He is so brave.

The doctors said that allergy shots would be too risky - he's too sensitive. He could have a severe reaction just from the shot. There are allergy shots available for food allergies, but, again, Isaiah is way too sensitive. There are also only a few shots available for food allergies and still not worth the risk to Isaiah. The doctors wanted to do skin tests, but his IgE levels are just way too high (from the RAST testing - a blood test). He's allergic to soooo much stuff.

For now, we except thing for what they are, with a hope for healing and a different future. For now, Isaiah has this horrible disease along with the rest of these allergies. However, I know that God is able to do amazing things - God can heal Isaiah. Maybe we won't see Isaiah healed today, but there is always a hope for tomorrow. For some reason, God has Isaiah here. God knows what He's doing, even if we don't know the whole plan. At this point, I don't need to know the whole plan, just as long as God gives me the strength to get through this. As long as God gives Isaiah the strength to get through this.

On a lighter note, Isaiah seems to be feeling better. He is giggling again and less grumpy. On our trip home, Isaiah was wide awake and talking/singing for almost the whole time. There was one time where Isaiah was crying. He was inconsolable and crying, "Help me, Mommy!" I felt awful! When I pulled off at a gas station and got him out of the car, he was still crying - he looked like he was in pain. I just kept thinking, "Oh, not here. Not now. PLEASE!!! We are too far away from All Children's and not close enough to home for this to happen!" Well, there was no need to fear . . . I took Isaiah into the bathroom where he told me to take off his diaper. What??? So, I did. I asked him if he wanted to sit on the potty and he said, "Yes!" I didn't think the child would ever stop peeing!!! =0) Isaiah went to the potty!!!! YAY! =0) Of course as soon as we got home, it all ended. Yup, he won't go near the potty! =0) Go figure! I guess it was one of those one-time things. =0) At least he has the idea, right?

We also got stuck in pre-launch traffic!!! Ugh! It was stop and go for sooo long, but we finally made it home . . . and before the shuttle launch, too! Yup, we saw the whole thing! It was amazing! The sky was clear enough this time to actually see the night launch, too (the time before was pretty cloudy and you only saw a little bit of the launch before the shuttle was covered by clouds)! =0) I have a video of the whole thing. Isaiah loved it! I also have pictures of the moon - it was just a beautiful night last night!

If you listen closely, you can hear Isaiah's excitement . . . and you can see where I was having issues with the tripod (and the camera because I was arguing with the tripod) . . . and where I picked the tripod up because I gave up on using it! =0)

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Isaiah 58:8-9

Then your light will break forth like the dawn,and your healing will quickly appear;then your righteousness will go before you,and the glory of the LORD will be your rear guard.Then you will call, and the LORD will answer;you will cry for help, and he will say, "Here am I".

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Isaiah-isms =0)

This is our new addition to the page - Isaiah-isms. He can say some pretty funny things . . . it's a tad scary, all those thoughts that have been locked up for so long . . . . =0) Here are a few of the things Isaiah has been saying lately . . .

"You can't be sad when you poop, Mom!"

"I got a chicken-cups, eeep!" (hiccups)

"I not go to bed ta-day!"

"To if-fibiddy an beyon!" (thanks, Buzz Lightyear!)

"I can't wanna do it."

"Take it-ta da top and cha-cha-cha!" =0) (I have no idea where that came from, but he's too cute when he says it!) =0)

"La hoo-hah-rah-cha, la hoo-hah-rah-cha. An he needs a get a kit-tar!" (kit-tar = guitar) =0)

"Dri-ben tuh Tord's tar-by!" (I'm in the Lord's army . . .)

"Aaaaaaagh! You're a muggering me!" =0)

"Lord Jesus to play!" ("Lord, teach us to pray.") =0)

"I hab wubed you with an eber-asting wub." ("I have loved you with an everlasting love.") =0)

Isaiah

In addition to severe food and environmental allergies, Isaiah has also been diagnosed with systemic mastocytosis. The combination of the two is unusual and seem to irritate each other - the allergic reactions are are worse because of the masto, and the masto reactions are worse because of the allergies.

A little about Mastocytosis . . .

Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body. It can affect just the skin or it can also affect internal organs such as the stomach, lungs, and intestines. Instead of being an autoimmune disease, mastocytosis is considered to be a myeloproliferative disease in that the bone marrow is producing too many of a certain type of cell - in this case, mast cells. Some of the possible symptoms of mastocytosis look a lot like food or environmental allergies. A person with mastocytosis may be convinced that they have food allergies but the antibody tests may be negative.

According to FAAN, "an anaphylactic reaction may begin with a tingling sensation, itching, or a metallic taste in the mouth. Other symptoms can include hives, a sensation of warmth, wheezing or other difficulty breathing, coughing, swelling of the mouth and throat area, vomiting, diarrhea, cramping, a drop in blood pressure, and loss of consciousness. These symptoms may begin within several minutes to two hours after exposure to the allergen, but life-threatening reactions may get worse over a period of several hours.

In some reactions, the symptoms go away, only to return two to three hours later. This is called a “biphasic reaction.” Often these second-phase symptoms occur in the respiratory tract and may be more severe than the first-phase symptoms. Studies suggest that biphasic reactions occur in about 20 percent of anaphylactic reactions."

Watch my Autism Speaks video message

My Dad (aka Grandpa . . . okay, so he's Ye-Ye)

A little about Waldenstrom's Macroglobulinemia

Waldenstrom's macroglobulinemia is a rare, chronic cancer that is classified as a plasma cell neoplasm. It affects plasma cells, which develop from white blood cells called B-lymphocytes, or B cells.

B cells form in the lymph nodes and the bone marrow, the soft, spongy tissue inside bones. They are an important part of the body's immune (defense) system. Some B cells become plasma cells, which make, store, and release antibodies. Antibodies help the body fight viruses, bacteria, and other foreign substances.

In Waldenstrom's macroglobulinemia, abnormal plasma cells multiply out of control. They invade the bone marrow, lymph nodes, and spleen and produce excessive amounts of an antibody called IgM. Excess IgM in the blood causes hyperviscosity (thickening) of the blood.

Waldenstrom's macroglobulinemia usually occurs in people over age 65, but can occur in younger people. A review of cancer registries in the United States found that the disease is more common among men than women and among whites than blacks.

Some patients do not experience symptoms. Others may have enlarged lymph nodes or spleen, and may experience fatigue, headaches, weight loss, a tendency to bleed easily, visual problems, confusion, dizziness, Alzheimer's-like symptoms, and loss of co-ordination. These symptoms are often due to the thickening of the blood. In extreme cases, the increased concentration of IgM in the blood can lead to heart failure (taken from http://www.iwmf.com/WhatIsWM.htm).